One of the biggest hurdles in the fight against Alzheimer’s and related dementias is finding willing participants for clinical trials. These studies are critical to developing viable treatments, but they obviously require dedicated subjects in order to move forward. It’s something I definitely think about – would I be willing to participate in a study now or if diagnosed in the future?
Knowing what I know today, I can say with 99% certainty that if I had a positive diagnosis I would sign up for a trial immediately. Participating without a diagnosis, however, is still a big question mark in my mind.
Alzheimer’s Prevention Registry
The Alzheimer’s Prevention Initiative’s Registry is just one of many sources for information regarding current research opportunities. The system matches members with studies they may qualify for based on responses to a brief profile questionnaire.
Some of the opportunities are as simple as participating in a survey, which I recently did. Questions included:
- Would you want to have a biomarker test (i.e. PET scan or spinal tap) to determine if you might have Alzheimer’s disease years before you develop any symptoms even if there was no known effective treatment at that stage? 80% of respondents answered yes.
- If you had genetic testing as part of a research study in which disclosure of results was optional, would you want to know the results? 89% said yes.
- If you had the opportunity to undergo genetic testing for Alzheimer’s disease that was NOT covered by your insurance (out of pocket cost to you of at least $100), would you want it? 58% said yes, they would cover the out of pocket cost.
The Demographics Don’t Lie
My response, as well as the overall results, surprised me. Historically, I’ve been of the opinion that if no cure exists, I’d rather not know. However, with a nagging fear constantly in the forefront of my mind, my thoughts on the subject have shifted considerably.
I suspect the change is directly related to the helplessness I felt as I watched my mom’s unimaginable suffering during the last six months of her life. The nearly nine years she was ill were horrible, but those last months were unspeakable. It is an experience that shakes you to your core, and neither life nor your outlook on it, are ever the same.
The Registry’s membership demographics tell me that I’m certainly not unique; 97% of the members have not been diagnosed, 79% are female, and 70% have a known family history. It appears as though my change of heart puts me in lockstep with the majority of my demographic.
Clinical Trial Resources
If you think you or someone you know might be interested in learning more about clinical trials, I urge you to visit the Alzheimer’s Prevention Registry or any of the resources listed below. It’s important to keep in mind that there are many types of trials, and while some do involve experimental drugs, others examine things like education programs and alternative treatments such as diet and exercise.
The National Plan to Address Alzheimer’s calls for effective treatment or prevention of the disease by the year 2025. Although it will take monumental effort, I truly believe this is an achievable goal. Alzheimer’s and dementia are finally moving into the mainstream spotlight. We can’t let up. Whether through participation in clinical trials, advocating with lawmakers, fundraising, or just keeping the conversations going, we can all do something to help advance the movement to end Alzheimer’s.
We would love to hear your opinions on clinical trials – is it something you’ve thought about? Would you consider joining a trial?